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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Complex Chronic Disease Clinic Appoints Medical Director

Discussion in 'General ME/CFS News' started by Ember, Jul 11, 2012.

  1. Ember

    Ember Senior Member

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    July 10, 2012

    The appointment of Dr. Alison Bested to the position of Medical Director at Vancouver's new Complex Chronic Disease Clinic has been announced. (Below is the official press release.)

    Notice that the description of the new clinic includes both ME and CFS patients:
    L'engle likes this.
  2. Kati

    Kati Patient in training

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    Dr Alison Bested who has been working at the Environmental Clinic at Woman's hospital in Toronto has accepted the position of medical director at the incoming Complex Chronic Disease Clinic in Vancouver.

    You can view the news from the Vancouver Sun here.

    Sources from ME/FM Action say she will start on October 1st and anticipates the clinic to open in 2013, so she can take time to hire her team.
    L'engle likes this.
  3. elbosque

    elbosque

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    I wish it was sooner. Anyone hear anything more about the DNA study they were supposed to start right away? My doctor submitted me in the study but neither of us have heard a thing back.
  4. Kati

    Kati Patient in training

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    What DNA study are you talking about?
  5. Ember

    Ember Senior Member

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    I was disappointed by the Vancouver Sun's persistent refusal to report on ME, and I voiced my displeasure with them about that again yesterday.
    elbosque likes this.
  6. Gamboa

    Gamboa Senior Member

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    Canada
    Great news for people in western Canada. Not so good for those in the Toronto and eastern Ontario who are now losing one of the few ME/CFS specialists here. Is someone else taking over for her at the Women's College Hospital Clinic?

    Gamboa: a past patient of Dr. Bested.
  7. Kati

    Kati Patient in training

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    Hi Gamboa. I am in British Columbia.

    I am involved in Canadian advocacy for health care for everyone in Canada. However the provinces have a lot of say about taking care of their citizens because of the Canadian Health Act transfer to provinces. The provinces have to care for all of their citizens. Still I have created a petition and sent letters to health Canada and the health care minister as they fund research (0$ for ME) they approve medication for diseases, and have some say in clinical trials (for instance the CCSVI trial for MS)

    I strongly suggest to Ontarians to make this story public, that a ME expert is leaving the province and that instead of providing increasing services (treatments, that is) to their patients, the latter are being left to their own device. This is a human right issue! Let your MPP know. It is totally unfair to you guys- I don't have the number of patients in Ontario at hands but I am sure it is over 100 000 patients or very close to that.

    Saying nothing is accepting that this is the way it is...

    My 2 cents.
  8. elbosque

    elbosque

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    Hi Kati. Last January (I think) Dr. Hyams told me that one of the first things they were planning was a genetics study of people with ME/CFS. I know nothing more than that. I did email the hospital the other day with my list of questions about the new centre and also asked them about the study and told them my doctor had submitted my name. I got nothing back except the standard "we got your email and will get back to you when we can" message.
  9. Kati

    Kati Patient in training

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    Thx Elbosque.
  10. elbosque

    elbosque

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    Spoke with Dr. Hyams about this last week at my appointment. He said that he thought that the decision to select Dr. Alison Bested as head of the new clinic was an excellent one. He said their is always a tension between those doctors wanting to concentrate on pure research and those doctors wanting to focus on providing treatments. He thought that Dr. Alison Bested would be the best person to maintain the need for balance in the new clinic. He said it will still be a while before the clinic is operational because they are in the process of deciding what they will do. Sounds like a good time for those of us who are ill to engage them, no? There has been no new word of the "genetics study".

    I did note that Dr. Hyams is now having his CFS patients do a fatigue/impairment questionnaire before each appointment. Prior to this it was just a couple forms relating to pain (locations and impacts on living). I had actually started writing on the one form that bowel, fatigue and mental fog were having significant impacts on my daily living. I often feel it is easier to deal with pain than the other issues.
  11. Nanou

    Nanou

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    Toronto
  12. Nanou

    Nanou

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    I m new to this site. Looking for a CFS doctor in Toronto?
    Asked to be referred to women s college a couple do months ago but no news yet?..
  13. elbosque

    elbosque

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  14. stasik

    stasik

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    Hi Nanou,

    I was referred to WCH over a year ago, and just had my appointment last week, so prepare for a looong wait. To tell you the truth I was a bit disappointed. The doc spent a fair bit of time with me, but because I was feeling a bit out of it, I don't think I told him everything quite correctly, I wish I had my mom there with me, because she pointed out a few incorrect things I said. E.g. when he asked me about post exertional malaise, I spent a lot of time thinking about it, because in recent past it hasn't been as pronounced. Then, the very next day I went out for a walk, and had a bit of a crash, and after sitting on the grass by the sidewalk eventually made it home. What disappointed me is that I was told that I only have 2 more appointments left, according to their budget. I was also disappointed that a lot of my concerns were not addressed (maybe they cant be?) and I guess by the fact that I was looking for a faster "cure".

    Anyway maybe I can tell you the advice given me, so you can save yourself the trouble, or at least try things out before you get your appointment.

    So the idea is that all this is happening due to lack of mitochondria, resulting from oxidative stress. My prescription was to reach an aerobic state by rapid walking for 2 minutes, followed by 5 minutes rest. Start this out slowly then build up. Do not crash! (this is what happened to me, as I tried too hard - there is NO way I can raise my HR above 60 to 120 I was supposed to).
    After you do this, you should go to a sauna, or if sauna is unavailable, wrap yourself in a blanket, and sweat.

    Another prescription was to get the K-Pax energy formula from the US, which I got here http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/Energy

    There was another thing I am supposed to be doing, but for the life of me I can't remember what it is, and I can't find the sheet it was written on :) Just another thing to get used to.

    So this was a brand new thing that this doctor has heard of (which seemed odd), so I asked for what he typically does, and he has his own supplements. This includes use of D-Ribose, Creatine (not in the KPAX formula I believe), Coq10, ALA, ALCAR, Magnesium, Nac, and other antioxidants, including Pycnogenol, Melatonin, Fish Oils, Green Tea, L Theanine, Curcumin, Vit C, E, Flavinoids, B vits. I want to post the complete details of this in the treatment section so that other people can benefit. I hope that the doctor in question would not mind this if it helps others.

    I believe that the MD will have other more personalized advice for you, including diet (possibly Vegan?), but my case is different.

    Hope this helps somebody.

    Hope it helps me.

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